A book review of Aaron J. Jackson's Worlds of Care: The Emotional Lives of Fathers Caring for Children with Disabilities
by Neymat Chadha
Published onApr 14, 2022
Book Review: Worlds of Care
Worlds of Care: The Emotional Lives of Fathers Caring for Children with Disabilities by Aaron J. Jackson (2021). Oakland, CA: The University of California Press.
The last two years of the COVID-19 pandemic have initiated a series of conversations within sociology and anthropology about the reconfiguration of familial relations, gender roles, and ethics of care in times of illness and disease. Yet, for years, these disciplines have overlooked the moral dimensions of disability, caring, fatherhood, and relationality. Worlds of Care, written by Aaron J. Jackson, an anthropologist from Australia, comes as a timely contribution toward bridging this looming gap, as it effectively foregrounds the lived experiences and personal histories of men caring for children with cognitive and physical disabilities. Jackson examines the often-unexplored linkage between masculinity and caring and visualizes the contextualized worlds and embodied interactions of men vis-à-vis the dominant gender norms surrounding caregiving. A rare combination of ethnographic fieldwork and personal memoir, Worlds of Care untangles the complexities of fatherhood, masculinity, and patriarchy within the everyday processes of care, through which fathers of children with disabilities create “habitable worlds” (p. 7).
Methodologically, Jackson takes on the dual role of an ethnographer and a father of a child with a disability. (The child died unexpectedly and tragically in 2020.) The ingenuity of this book lies in how it features the pervasive voices of fathers – some of whom were members of support groups – whose “everyday” is in no sense ordinary. On the contrary, their everyday is marked by disruptions within which the complex processes of identity and selfhood formation find their origins in what Veena Das calls “ordinary realism” (2015), in which a partial rupture from the ordinary takes place. Jackson’s work is heavily influenced by the French phenomenologist Maurice Merleau-Ponty, through which the author effectively carves out an embodied, relational, and intersubjective perspective to understand the sensoriality of care and fatherhood. He also draws inspiration from German philosopher Martin Heidegger’s understanding of human beings as self-interpreters and prompts the reader to view fathers as “body subjects” who forge and develop a sense of self in relation to others, across temporal boundaries and cultural practices.
Spread across seven chapters, two interludes and an epilogue, Worlds of Care ties together four broad themes: contextualization of fatherhood through memories and the creation of new forms of self-understanding (Chapter 1-2); interbodily dimensions of caregiving and their relationship with gendered norms of manhood (Chapter 3-4); experiences of embodied shame and belonging (Chapter 5); and the moral personhood of disabled children (Chapter 6). In exploring these imbricated themes in the context of the contemporary United States, Jackson turns our attention to the challenging demands of caregiving that push parents away from their familiar worlds and position them in a new “subjective trajectory,” wherein they re-orient their lives as caregivers. Through this, he powerfully weaves an ethnography that does not aim to understand fatherhood as merely a kinship category, but rather as a living and ever-evolving experience shaped by embodied relational knowledge and the experientiality of caregiving (p. 74). Challenging the perception that reduces men to merely embodying different types of masculinities, Jackson takes a cue from pediatrician and writer Lisa Frietag’s focus on moral work of raising children with special needs and makes visible the embodied emotional experiences of fathers who are involved in intense, prolonged, and intimate care – what Freitag calls “extreme caregiving” (p. 9).
One of Jackson’s most compelling contributions to disability studies and the anthropology of care is his nuanced engagement with contemporary feminist literature. He brings into sharp relief an expanding field of practices that highlight the evolving role of fathers in childcare. Drawing on dominant discourses related to caregiving, which recognize mothers as carrying out most of this informal labor, Jackson seeks to contextualize the complex histories of fatherhood that are formed amid “dominant masculine ideals” that shape how men relate to themselves and the world around them (p. 9). For instance, Jackson provides an account of Ethan, a father of a child with a disability, whose normative understanding of the patriarch as a protective force conflicts with a sense of vulnerability and concern evoked by his son’s disability. This “incarnation of disorderly fathering” and the naturalization of women as inherently embodying maternal and caregiving instincts become evident in a short ethnographic vignette in which Ethan states, “the guy mindset is fragile as far as being able to process complex emotions… women are just better equipped to handle very difficult circumstances, and men tend to run from it” (p. 83; p. 95). Highlighting the limitations of such rhetoric, Jackson effectively points towards the need to understand the relevance of bell hooks’s idea of “dominator models of masculinity” –– whose alternative, hooks argues, is not to equate masculinity or manhood with negativity, but to reclaim it by introducing “feminist masculinity” that does not rely on domination but rather interdependence and interbeing (hooks 2004).
A set of critical-yet-overlooked questions that Worlds of Care invites us to consider include how the new lives of parents of recently born children with disabilities come into being vis-à-vis a biomedical view of health. How do parents then navigate public spaces that are objectified by ableist perceptions of “othering” children with disabilities or when the child’s body becomes a “body-for-others” (p. 120; p. 123)? How do their parents grapple with negative self-conscious emotions such as guilt, anger, and shame (p. 124)? Jackson argues that the heteronormative and Western cultural forms of body normality and biomedical control seek to “maintain bodies,” thus compelling parents to train their children to achieve standards of normalcy or what is often perceived to be a normal life. Worlds of Care contributes to and extends the strand of literature that seeks to contest the dehumanizing stereotypes that frame children with disabilities as embodying an incomplete personhood by presenting the often-overlooked perspectives of parents as caregivers. At the same time, Jackson draws on his own experience as a father of a child with a disability and poignantly conjoins the complexity of a loving father-son bond with the perpetual societal imperative to “fix one’s child”. The failure to “overcome the odds”, he notes, would mark his failure as a father. Moreover, his ethnographic narrativization of the limits and possibilities of how parents experience the world vis-à-vis able-bodied persons struck me as a remarkable intervention in the existing literature on caregiving and the experiences of parents with children of disabilities. Such parents, he writes, are learning “how to comfortably inhabit the space between their meaning-rich perceptions of their children and devaluating gaze of the other” (p. 119).
At times, Worlds of Care reminded me of Unexpected: Parenting, Prenatal Testing, and Down Syndrome, written by Alison Piepmeier (2021), who – both as a parent of a child with Down syndrome and as a cancer patient herself – grapples with the impact of prenatal testing to detect the possibility of disabilities in unborn children (such as amniocentesis). In a similar and yet also in his own unique way, Jackson careful weaves together his own experiences with Lyme disease and those as being the father of a child with a disability, which have shaped how he now understands the moral dimensions of caregiving with his son: “through giving and now receiving care I learned how inevitably dependent we are on each other” (p. 108). What makes Worlds of Care a compelling ethnography is its emphasis on relations, embodied interactions, and lived personal histories – making it a notable contribution to ongoing conversations on disability and caregiving. Therefore, while Worlds of Care draws heavily on critical scholarship, the text’s combination of personal memoir and the phenomenologically oriented ethnography of care brings to fore the relatability of its narratives for not only men but for individuals and parents – beyond genders, sexualities, geographies, and generations, both within and outside academia.
Neymat Chadha is a PhD candidate in social anthropology at Indian Institute of Technology, New Delhi. Her doctoral research examines how the medical practice of hysterectomy, with the bodies of female sugarcane cutters as its point of focus, is being employed to facilitate labour processes in sugarcane farms in Maharashtra, India.
Das, V. (2015). Affliction: Health, Disease, Poverty. Fordham University Press.
Hooks, B. (2004). The Will to Change: Men, Masculinity, and Love. Beyond Words/Atria Books.
Piepmeier, A. with Adams, R. & Estreich, G. (2021). Unexpected: Parenting, Prenatal Testing, and Down Syndrome. New York University Press.
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